.....the pact we'd made...........

If you're "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our story. I very much appreciate your thoughts and comments For anyone who has been along for the whole wild ride - Thank you!

.....the pact we'd made...........

“How can I help you officer?” the elderly lady in her convertible asked.

“Do you know how fast you were going?” the police man asked and then answered, “TWO, you were going 2 miles per hour”!

The lady smiled and replied, “Yes, Sir, I always obey the speed limit.  I saw the sign that said “2””.

The officer explained to her that “2” was the highways number NOT the speed limit as he glanced in to the back seat where three more little old ladies

looked terrified and windblown.  “What’s the matter with them?” the policeman asked the driver.

“Oh, they’ll be fine; we just came off highway 101” was her reply.

I giggle every time I think of that joke, but I wasn't giggling when I followed (or tried to follow) the van that was transporting my mother to her appointment with the infectious disease doctor on August 13, 2013.  I imagined mom probably looked like one of the passengers that just came off the “101”.  Even though the wheelchair was strapped in, mom was still being jostled from side to side in the chair as the driver sailed through intersections and around corners.  I lost sight of the van at about the 3^rd stop light he ran through; at that moment I was wishing I had gone ahead and paid the astronomical price of renting a wheelchair accessible van so I could transport mom myself.  I had to figure something out before her next appointment; I didn't want to make her ride in that van again.  Besides, I was going to have to have something that she could ride in to take her home ten days.

The thought of going home after being away for over a month brought happy thoughts to mind and I relaxed a little on my way to meet mom.  I hadn't seen my husband; my younger daughter; or my son in over a month and couldn't wait to get home.  With luck we would get home on the 23^rd of August; we planned to leave immediately following moms’ last dose of IV antibiotics and her release from the orthopedic surgeon.

Both mom and I were looking forward to making it home on my brother’s 60^th birthday.  I was also looking forward to being home for my 50^th birthday and to celebrate our 27^th anniversary with my husband on August 30th.  I was still letting my mind stay in a happy place as I found a parking place and walked across the campus to find mom being lowered from the van; she didn't look any worse for the wear, so I collected a number to dispatch the van when we were finished and wheeled mom in to her appointment.

Mom was checked in and we were shown to a room where we chatted while we waited for the PA.  We talked about how bad her ride to the appointment was; we talked about which of the staff at the SNF was good and which were not so good; we talked about her laundry; we talked about everything except the big pink elephant in the room – what exactly was Mycobacterium Avium Complex, and what would this new diagnoses do to moms’ current prognosis?

We had successfully managed to avoid the topic of why we were there until the PA joined us in the small room.  She was a pleasant woman who took her time explaining to us not only the infection, but also the course of treatment.  It sounded like they had it under control; mom was already being treated with all but one of the appropriate antibiotics and had begun to show improvement.

I still had a few questions, “So, will mom have to go home on the IV antibiotics after all”?  I was pleased when the answer from the PA was

“No, they will all be oral”.  “How long will she have to continue them?” I wanted to know.  They wanted mom to be treated for a minimum of six months with three, possibly 4, heavy duty (and very expensive) medications.  My mind was trying to quickly calculate the best and worst case scenarios when I asked, “So, she will still be on the antibiotics when they put in the prosthesis in October, right”?  I felt numb; I couldn't have heard her answer right!  I felt the heat in my whole body; I thought I was going to pass out.  At that point I didn't know if the horror I saw on my mother’s face was because of the news we had just received or if it was due to my reaction to said news.

My eyes widened; my voice thundered; and the Physician’s Assistant looked terrified as she visibly flinched and, since the only way for her to get to the door was through us, she slid her chair as far from me as she could get without crawling under the desk.  After a moment or two of silence, the PA flinched again at the sound of my voice.  “Nobody ever said anything about mom having that rod in her leg and not being able to walk for SIX MONTHS.  I can’t even get her in the car to take her home!” I roared in the small room.  This is where rational and emotional collided and nearly derailed me.

I tried to calm myself as I listened to the shaky voice of the PA as she very quietly explained, once again, the complications of this new infection

as well as the time frame of “usual” treatment.  Rationally I knew that they were doing everything they could for mom; rationally I knew we were lucky they had found this infection here or it wouldn't have ever been found at home; rationally I knew that we were going to do whatever it took to fight this infection as long as mom had any fight left in her; rationally I knew the tears I felt stinging my cheeks were from the emotional turmoil I was feeling at that moment; rationally I knew I was being selfish.

Emotionally, however, I was a wreck.  Although I truly did have a lot of

concern about moms’ immobility, that was only part of my falling apart.  If mom didn't get her new knee prosthesis until mid to late January 2014, she would likely be in the hospital and/or rehab when my third grand baby was due to arrive BACK HOME; I so wanted to be home with my younger daughter and her husband when their first child made a debut.  While I was contemplating what we would do next, the PA managed to step between us and excused herself from the room.  With tears glistening in her eyes, my mother said, “I’m sorry honey”.

I nearly choked trying to talk around the big lump that had formed in my throat.  How could I have been so insensitive?  How could I have acted so selfishly that my mother felt the need to apologize for being sick?  “No, mom, I’m sorry”, I knew she knew I had been thinking about what I was likely going to miss out on, rather than what all this was doing to her; I felt so guilty.

I stepped beside mom and wrapped my arms around her.  “We’ll get through it.  Whatever it takes, right?” I said reminding mom of the pact we’d made nearly a year earlier.

How many chances would we get?

If you're "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our true story that is sometimes stranger than fiction! I very much appreciate your thoughts and comments For anyone who has been along for the whole wild ride - Thank you!

How many chances would we get?

I was so caught up in researching and continuously thinking about moms’ most recent diagnosis and prognosis, as well as arranging transportation for her appointment with the infectious disease doctor that was scheduled for August 13, 2013 that I had completely forgotten about the appointment I had rescheduled for mom back home for August 11th.  We had waited so long for this opportunity, I hated that I had to change the appointment AGAIN.  How many chances would we get?

I had been searching for a new primary care doctor to take over moms’ care for years with no luck.  Due to moms’ multiple complex medical problems, the general consensus was that she required the specialty care of an internist.  Unfortunately, mom had been denied by every office in the relatively small town we live in and seemed to be stuck with the internist she had been with for years; the internist who had ignored obvious signs of infection on multiple occasions; the internist whose office staff was every bit as arrogant as he was; the internist who we would wait several weeks for mom to be seen after a hospital admission only to have our concerns and requests dismissed.  I dreaded making the call to have to cancel the appointment with the new primary care provider a second time before we had even met or been formally accepted to their practice.  What if they had a “Three Strikes and You’re OUT” policy?

I reminded myself that this would only be the second strike and dialed the number for the new doctors’ office.  The receptionist was pleasant, efficient and accommodating as she changed the “intake” appointment to early September.  I felt somewhat better but because I had to change that appointment, it meant I had to make one (hopefully) last appointment with her current PCP for her follow-up visit after discharge from the SNF.  With the discharge date targeted for August 23, 2013, she would need a follow-up visit by the 30^th.

As much as I dreaded it, I dialed the number to the Internists office.  I was told the first appointment available wouldn't be until the middle of October.  “But, this is for a hospital discharge follow-up”, I knew the discharge papers would likely have orders that mom was to be seen 5-7 days after they released her.  When I told her mom was suppose to have another surgery to remove the rods and replace the knee joint in October, the nurse suggested we “might want to put it off until November” to accommodate the Internists vacation schedule.  “Are you insane” I wanted to scream, instead I asked when the MA would be back who I usually had to talk to in order to get “squeezed” in to the schedule; she was on vacation until next week and they would leave a message for her to call me.  I hated that we would ever have to step foot in that office again; I needed a break!

With it being a Friday afternoon, I knew I wasn't going to make anymore headway in regards to doctor’s appointments so I jumped at the chance to spend a few hours with my grand children so my daughter could go out for a few hours.  One wouldn't think that taking care of a 3 month old and a 2 year old for so short of time could be so tiring – I wondered how I had ever found the energy to actually raise children!  After 3 hours I was exhausted, but I still felt better than I had before my babysitting gig!  It may not have been a “break”, but something about baby smiles and giggles just makes me feel good!  Besides, I was only going to be in town for a couple more weeks; how many chances would I get?

Moms smiles make me feel good too and she grinned from ear to ear as I recounted the antics of my two year old grandson when I returned to the SNF that night to help her get ready for bed.  We had just finished moms’ nightly “getting ready for bed” routine and her clothes were laid out for morning when the CNA popped her head in to see if we needed any help.  I was thrilled to see that it was one of the aides that I felt most comfortable with, she was so much better than "toothache" girl (who I will tell you about sometime!) I always slept better when I knew this particular person was caring for mom; the fact that she brought me an icy cold Pepsi whenever she was working was a bonus!  Another break!

I had yet another brief respite the following morning when I went to watch my grandson play soccer.  OK.  I really wouldn't call it “playing” soccer, but watching 2 & 3 year olds (each with their own ball) running around the soccer field is quite entertaining and I loved every minute of it!  You've never seen quite as much excitement as that moment when it’s “snack time” after a hard practice!  The experience was priceless and I was so glad I had taken the time to be there.  After all, how many chances would I get?

“Excuse me”, I smiled at a lady with her grandson who was getting in to the car next to mine.  Her smile was bright and she thanked me as I

stood to the side while she loaded the baby in the car seat.  Her voice seemed so familiar.  The baby did or said something that made the lady chuckle; I KNEW that laugh.  I was racking my brain trying to think of where I knew her from when she turned and faced me.  The lady thanked me again and her eyes flashed a look of recognition.  “I know you!” She exclaimed, “Where do I know you from?”  Just as she finished the question, my mind somehow reached in to my memory bank and registered the answer.  “Is your name Barb?” I grinned when she looked startled.  I told her my name and started to remind her where we knew each other from when she threw her arms around me and laughed.  I wish I had had more time to reminisce with my friend and co-worker from 25 years ago; how many chances would I get?

It had been a good day so far and it got a little better when I arrived at the SNF.  Mom was still in therapy, so I slipped quietly in to the room and watched; I knew how important it was going to be to keep up the routines once we returned home, so I took every opportunity I could to observe.  I was pleased to see how hard mom was working and amazed at how well she was doing; although getting to a standing position even using her platform walker was a challenge, once she was standing she was able to take a few steps.  I hoped this new diagnosis, and whatever the infectious disease doctor would tell us the following week would not hinder her progress; I wasn't sure she could recover from another set-back.  How many chances would she get?

I wasn't sure it had been worth it.

If you're "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our story.

I wasn't sure it had been worth it.

I had spent most of the night researching; I read everything I could find about MAC (Mycobacterium Avium Complex).  I read the bad and the ugly; there was no good to be found.  When I first started reading I wondered out loud how in the world my mother could have contracted an infection that was mostly associated with HIV/AIDS; the answers was embedded within the first couple of paragraphs.  The words “ubiquitous”, “opportunistic” and “immune-suppressed” glared at me as I began reading; once exposed (which could have been from a number of sources), mom hadn't stood a chance of the infection not invading her severely suppressed immune system.  Although the many years of various treatments for moms’ Rheumatoid Arthritis had given her a number of years of (at least some) relief, at that moment I wasn't sure it had been worth it.

I have heard for years that Rheumatoid Arthritis won’t kill you, but the complications, not only from the disease itself, but also from the many drugs used to combat it, could.  I finally fell asleep with the computer in my lap and had fitful dreams about what life would have been like for my mother had she let her over active immune system continue to cripple and ravage her body vs what it was like now as she fought for her life (and limb) following years of suppressing the immune system to lessen the effects of the symptoms.  I can tell you that both scenarios fell in to more of a nightmare category.  I woke less than three hours later knowing it was time for me to practice some suppression of my own; I needed to devote my time and energy to things I could control.

 

I laughed at myself as I tried to make a list of exactly what the “controllable” things were in my life; my paper was blank.  Who was I kidding?  I knew who was in control and it certainly wasn't me!  I prayed for guidance and the next thing I knew I was doing my laundry; funny, that hadn't even crossed my mind as needing to be on my “to do” list.  By 8:30AM I was digging around for quarters to finish drying my last load of clothes when my cell phone rang.

My mother doesn't usually call me early in the morning unless she really needs something (she knows how much of a morning person I am NOT), but her voice didn't sound urgent when she said; “I didn't wake you, did I”?  I told her I had been awake long enough to have done three loads of laundry and asked if everything was OK; mom said everything was “fine”.  I asked how her breakfast had been; “fine”.  “How did you sleep”? I asked; “fine” was the answer.  I could tell by the way she was answering that something was NOT fine and wondered if she was going to make me ask 20 questions before telling me what it was.

 

I got to about question number twelve when the dryer buzzed and mom said “I’ll let you go honey, I really didn't need anything”.  I told her I would be there within the hour and asked if she needed anything from the store; she didn't.  As we often do, before we actually hang up the phone, we chatted about several more insignificant things and then I asked one more question - lucky number 13, “Did they tell you what time you were going to get that shower you've been waiting for”?  Bingo!  I guess I now knew where I was being guided next!

These things are great
in a pinch!

Since mom had been told her shower was going to be put off for yet another day, by mid- morning I had given mom a good sponge bath and used a “no-rinse” shampoo cap that I had picked up at the drug store to at least get her hair clean enough to style.  I nearly dropped the styling brush when mom said, “Well, I guess nothing has grown from the culture, huh”?  Mom knew that I checked for anything new in her medical records almost daily and I often knew the results were available even before the doctors did.  I hadn't yet decided how or when I was going to tell her about it, but I guessed the “when” was NOW and the “how” was with honesty; the problem was I was terrified and I didn't want to terrify her, so I fibbed…… a little.

I told mom that something had shown up on the culture, but that I didn't know what it was, “We’ll know more when we go to the doctor next week, I’m sure”.  I don’t know why I always forget that my mother knows me so well; she wanted to know what my “research” had turned up about whatever it was.  I reminded myself that honesty was the way to go and related to her the information as I understood it.  As I was telling her about the various symptoms and the many possible complications, the past couple years all the sudden made sense.

Unfortunately one of the characteristics of my mothers’ Rheumatoid Arthritis has been the lack of clinical symptoms needed for proper diagnoses or other medical conditions according to medical guidelines; she might display one or two symptoms, but three are required.  From what I had been able to understand in my one night of research, the MAC could be responsible for a number of afflictions mother had suffered the past couple of years; her lungs, her heart, her knee, her back, her eyes and ears – there was some evidence supporting the idea that all we've been through could be attributed to this horrible infection that I’m certain would have never been found had we not left the beautiful valley we call home in search of answers.